Rare Diseases Clinical Research Network




All studies are listed by participating rare disease consortium and status. Please click on the Study Name to learn more about a particular study. Information on a study will include: what is being studied, who can participate, what is expected of participants, and clinic locations.
Contact Registry on website for individual clinical trials- in order to be contacted in the future about clinical research opportunities and updates on the progress of the research projects.


Advancing research and treatment for frontotemporal lobar degeneration consortium
Autonomic disorders consortium
Brain vascular malformation consortium
Brittle bone dislorders
Clinical research in ALS and related disorders for therapeutic development consortium Consortium of eosinophilic gastrointestinal disease researchers Developmental synaptopathies consortium
Dystonia coalition
Genetic disorders of mucociliary clearance
Inherited neuropathies consortium
Lysosomal disease network
Nephrotic syndrome study network
North American mitochondrial disease consortium
Porphyrias consortium
Primary immune deficiency treatment consortium
Rare kidney stone consortium
Rare lung diseases consortium
Rett syndrome, MECP2 duplication and rett related disorders consortium
Sterol and isoprenoid research consortium
Urea cycle disorders consortium
Vasculitis clinical research consortium

Location Worldwide- available to Australians